Developmental perspectives

The law imposes a dichotomy (competent v. incompetent) on what, from a developmental perspective, is a spectrum of ability. Weithorn & Campbell (1982) compared decision-making in four age groups (9, 14, 18 and 21 years) using healthy subjects and hypothetical situations. The 14-year-olds showed a level of competence similar to that of the two adult groups. There were deficits in the 9-year-olds' understanding and reasoning, but their conclusions were very similar to those of the other groups.

Alderson (1993) interviewed 120 young people (aged 8–15 years) undergoing elective orthopaedic surgery; she also spoke to their parents and health professionals. Surgery was being undertaken for relief of chronic pain, disability or deformity, and on average the patients had already had five operations. The young people were asked, “How old do you think you were or will be when you're old enough to decide?” (about surgery). Their parents were asked, “At what age do you think your child can make a wise choice?” The two groups gave a very similar mean age (the young people said 14.0 years, the parents 13.9). But girls and their parents thought they would be ready to decide 2 years earlier than boys and their parents (girls: 13.1 years; girls' parents: 12.8; boys: 15.0; boys' parents 14.9).

Alderson also asked 983 ordinary school pupils (aged 8–15 years), “At what age do you think someone is old enough to decide with their doctor about surgery, without their parents being involved?” They gave a slightly older age than the orthopaedic group (mean of 15–17 years, compared with 14). It seems likely that past exposure to treatment decisions made the orthopaedic group more confident, suggesting that young people can be prepared for making treatment decisions.

In response to the question “Children vary greatly, but what is around the youngest age you think some of your patients could be trusted to make sensible, wise, mature decisions about proposed surgery?”, health professionals recommended a mean age of 10.3 years, much younger than their patients or the parents. This suggests that these health professionals were in danger of expecting too much of their young patients.

Only a few young people in the orthopaedic group wanted to be the ‘main decider’ (21 out of 120). Asked what they might do if they disagreed with their parents over the decision on surgery, relatively few said they would try to get their own way (22% of boys, 11% of girls). This suggests that conflict of this sort was relatively unlikely.

McCabe (1996) provides an excellent review of young people's cognitive and social development in relation to decision-making, while Reder & Fitzpatrick (1998) draw attention to the influence of emotional factors. Reviewing what research can contribute to our understanding of competence, Rutter (1999) concludes:

The law

The concept of competence is central to the law's approach to consent. The Gillick decision (see below) defines competence as the ability to understand information about the proposed treatment. This includes the treatment's purpose, nature, likely effects and risks, chances of success and the availability of any alternatives. The patient may weigh the information differently from the doctor, and unwise choices are permitted. Also, understanding does not imply that a decision is made on a rational basis. In fact, many critical decisions in our lives, such as whom we marry or which car we buy, are based on ‘gut feelings’ rather than rational analysis.

In practice, the level of understanding required is affected by the risk-benefit ratio of the proposed treatment. If the treatment is simple, effective and relatively risk-free, a high-level criterion will be selected and a patient who refuses is more likely to be deemed incompetent. Alternatively, where the treatment is dangerous and the benefits speculative, a lower criterion is selected, to protect the patient's autonomy.

Some feel that young people who refuse treatment should demonstrate a greater degree of understanding than those who consent. Pearce (1994) argues:

He goes on to talk about striking a delicate balance:

However, it is difficult to define a level of understanding that is adequate. Understanding can only be inferred and not observed directly, it is influenced by the quality of information given, and the ability to understand is not the same as actual understanding.

Judgements about competence are seldom neat. Roth et al (1977) say,

The clinician's preference for a treatment may cloud his or her assessment of the patient's competence. This, as Devereux et al (1993) put it, is revealed in

Guidelines

The legal test for competence is set out in Justice Thorpe's decision in Re C (Adult: Refusal of Medical Treatment) (C was a patient at Broadmoor Hospital suffering from schizophrenia who refused amputation of his gangrenous foot), describing it as:

The same test has since been applied to a young person in Re C (Detention: Medical Treatment).

The Department of Health's (DoH; 1999a) guidance emphasises the decision in Re MB (Caesarean Section), which repeats and expands on the advice given in Re C, but adds two further elements (MB was a pregnant woman who was declared incompetent when a needle phobia led to her refusing a caesarean section). In her judgment Lady Justice Butler-Sloss drew attention to:

Another such influence may be panic induced by fear. Again careful scrutiny of the evidence is necessary because fear of an operation may be a rational reason for refusal to undergo it. Fear may also, however, paralyse the will and thus destroy the capacity to make a decision.” (p. 224)

Specific guidance on young people is included in guidelines drawn up jointly by the British Medical Association & the Law Society (1995). Their recommendations are outlined in Box 1.

Judgements about competence can only be made case by case, taking account of the individual, the type of decision and the particular circumstances (see Box 2). In complex cases it is best practice for an independent clinician to advise on competence. It is vital to document carefully all the factors contributing to a judgement of competence. Finally, it is important not to set a higher standard for competence than would be expected for adults.

The law

Other than for emergencies or in the circumstances described in Part IV of the Mental Health Act 1983, consent is a necessary prerequisite for the treatment of any young person. The DoH's Code of Practice Mental Health Act 1983 (DoH & Welsh Office, 1999) gives the following definition of consent (15.3):

The recent General Medical Council guidance (1999) on consent places particular emphasis on providing patients with adequate information and freedom from pressure.

Table 1 gives a summary of who can consent. An adult having parental responsibility (including a local authority having a care order) can give consent on behalf of a young person (before the 18th birthday). However, this power is subject to a number of qualifications.

Table 1 Who can consent?

	Consent	Consent of others	Best interests	Refuse
Adults
Competent	Yes	No	No	Yes
	Consent is the only basis on which treatment of a competent adult can occur	No one else can give consent on behalf of a competent adult	A competent adult's best interests are irrelevant	Refusal may be rational, irrational or groundless
Incompetent	No	Yes	Yes	No
	No incompetent person can give a valid consent	Court can consent on behalf of an incompetent adult	Incompetent adult can be treated in his or her best interests	No incompetent person can withhold consent
16- and 17-year-olds
Competent	Yes	Yes	Yes	No
	Without need for consent from a person with parental responsibility	1. Persons with parental responsibility	Welfare of child is court's main consideration (Children Act), but court's authority is needed	Competent minor who withholds consent can be over-ruled by court or person with parental responsibility
		2. High Court jurisdiction
		3. Specific issues order
Incompetent	No	Yes	Yes	No
	No incompetent person can give a valid consent	1. Persons with parental responsibility	Welfare of child is court's main consideration (Children Act), but court's authority is needed	No incompetent person can withhold consent
		2. High Court jurisdiction
		3. Specific issues order
Under-16-year-olds
Competent	Yes	Yes	Yes	No
	But if possible also with consent of person with parental responsibility	1. Persons withparental responsibility	Welfare of child is court's main consideration (Children Act), but court's authority is needed	Competent minor who withholds consent can be over-ruled by court or person with parental responsibility
		2. High Court jurisdiction
		3. Specific issues order
Incompetent	No	Yes	Yes	No
	No incompetent person can give a valid consent	1. Persons with parental responsibility	Welfare of child is court's main cosideration (Children Act), but court's authority is needed	No incompetent person can withhold consent
		2. High Court jurisdiction
		3. Specific issues order

Clinical practice

There are many reasons for informing children and gaining their cooperation over and above obtaining valid consent. Alderson (1993) cites: respect for the child; to answer questions and help the child know what to expect; to reduce anxiety; to help the child make sense of the experience; to warn about risks; to prevent misunderstanding or resentment; to promote confidence and courage; and to increase compliance.

Young people are not involved in treatment decisions as often they should be. Rylance et al (1995) looked at consent in an immunisation campaign for school children. They distributed a questionnaire concerning consent to 851 school pupils (11- to 15-years-old) within 21 days of the campaign; 513 (60%) were completed and returned. While 435 (85%) children felt they had sufficient understanding to make a decision regarding immunisation, only four (1%) considered the information leaflet to be directed at young people, and only 34 (7%) reported that they had been asked to give consent. Most did not believe that attending the immunisation session implied consent (333, 65%), or that health professionals should assume that they consented (300, 58%).

The law

A competent adult has a right to refuse treatment “for reasons which are rational or irrational, or for no reason” ( Sidaway v. Board of Governors of the Bethlem Royal Hospital and the Maudsley Hospital, 1985). The Children Act explicitly gives competent under-16-year-olds the right to refuse assessment and treatment in the very limited circumstances of care proceedings (which can be overridden by the court). There are five provisions in the Act whereby a child of sufficient understanding to make an informed decision may refuse medical or psychiatric examination or other assessment: s38 (6), s43 (8), s44 (7) and paragraphs 4 (4) (a) and 5 (5) (a) of Schedule 3; and one provision where the child can refuse medical or psychiatric treatment: paragraph 5 (5) (a) of Schedule 3.

The Act and accompanying guidance and regulations place considerable emphasis on taking account of the child's views. But the central premise of the Children Act is that “the child's welfare shall be the court's paramount consideration” (s1 (1)). Unlike the competent adult, the competent child's views may be overruled in pursuit of his or her welfare.

Two further rulings by the Court of Appeal (Re R (A Minor) (Wardship: Medical Treatment); Re W (A Minor) (Wardship: Medical Treatment)) have significantly curtailed a young person's right to refuse treatment. They concern R, a 15-year-old woman refusing antipsychotic medication, and W, a 16-year-old woman with anorexia nervosa refusing transfer to another treatment centre. In the case of R, Lord Donaldson argued that in the Gillick ruling:

In both cases the court ruled that treatment could lawfully proceed with the consent of either a competent young person or a person with parental responsibility, and that the consent of a person with parental responsibility would override the refusal of a young person. These rulings have effectively made it impossible for a competent minor to refuse treatment and have led to controversy. In his judgment in Re W, Lord Justice Balcombe admitted:

However, Mason & McCall Smith (1999) argue that the Court of Appeal was right in its interpretation of s8 (3) of the Family Law Reform Act 1969 as upholding the right of someone with parental responsibility to consent on behalf of a minor, as it says,

Where a competent young person withholds consent, it may still be advisable to obtain the authority of the court for treatment. In cases involving sterilisation or abortion the court's guidance should always be sought. If neither the young person nor any other person can give valid consent, the authority of the court should be sought, unless emergency treatment is required.

There are other situations where the competent young person can be overruled. When he or she is in care, the local authority has parental responsibility and can give consent (parents also retain responsibility and it is good practice to consult them). Young people who are wards can only receive treatment with the leave of the court (Re G-U (A Minor) (Wardship)), and the court can use its inherent jurisdiction to overrule a competent child (Re W).

The Children Act has no specific safeguards for young people whose refusal of treatment has been overruled. A competent young person could instruct a solicitor to seek a specific steps order, but this would require an unusual degree of initiative and understanding of the law. This contrasts with the strict safeguards governing restriction of liberty in the Children Act: a young person's liberty cannot be restricted for more than 72 hours in any consecutive 28 days without the authority of the court (Regulation 10(1)) and must have access to legal representation in any proceedings (S25 (6)).

The Mental Health Act 1983 may be used to treat people of any age. With its requirement for a second opinion, time-limited application and opportunity for independent review, the Mental Health Act goes further than the Children Act to protect the rights of young people treated against their wishes. However, there is still a stigma attached to being detained under the Mental Health Act. Where there is a choice between using the Mental Health Act or the Children Act, account may be taken of the family's preferences. My own view is that in situations where the Mental Health Act would normally apply, it should be preferred. (For a full comparison of the two legal frameworks see: Williams & White, 1996; Bailey & Harbour, 1999.) The Mental Health Act is about to be revised and the inclusion of a test for capacity is one of the proposals being considered (DoH, 1999b).

In Scotland competent minors have an independent right to consent to or refuse treatment (the Age of Legal Capacity (Scotland) Act 1991).

Parents have a duty under the Children and Young Persons Act 1933 5(I) to obtain essential medical assistance for a child under the age of 16 years. The court needs to intervene if parents withhold treatment, the young person is either not competent or refuses to consent, discussion and modification of a treatment plan have been exhausted, or the young person is more likely than not to suffer significant harm without treatment. Where the parents' refusal is part of a wider process of neglect or abuse, a care order may be appropriate. This gives the local authority parental responsibility and the treatment can proceed with its consent. If the parents' care of the child is generally satisfactory and their objection to treatment is based on religious or other strongly held beliefs, it is possible either to ask the High Court to use its inherent jurisdiction to overrule the parents (Children Act, s100), or to apply for a specific issue order (Children Act, s8 (1)). (See Mason & McCall Smith, 1999, for an excellent exploration of the court's approach when parents disagree with medical advisors on prolonging life.)

On 2 October 2000 the Human Rights Act 1998 came into force, incorporating the European Convention on Human Rights into domestic law. Article 8 of the Act deals with the right to “private and family life” and could form the basis for a challenge to the court's existing approach to young people and refusal to treatment.

Guidance

Gaining the trust, cooperation and consent of young people who have been abused poses particular challenges. In these circumstances it may be utterly inappropriate to use parental authority to override the young person's objections (in the last resort application to the court may be needed).

The young person will sometimes refuse treatment despite the most sensitive and skilled approach of staff and parents. Pearce (1994) suggests that

The British Medical Association (1993) has suggested that another health professional be asked to act as an independent arbiter and attempt to negotiate an agreement.

I believe no young people (competent or otherwise) should be treated against their will unless they are more likely than not to suffer significant harm without treatment. Even when overruling a young person's refusal it will often be possible to give limited choices.

The guidelines in Box 4 are based on the best features of the law and guidance in this area.